Saturday, February 22, 2014

Let's Get Something Straight

I am disabled.

I have a disability.

Disability R Me.

I am not 'labeled with a disability.' I am not victim of a random labelling machine that randomly applies stickers to the foreheads of those unfortunate enough to be within it's reach. No. That didn't happen. I refused to use the language of victimization to describe a simple state of being.

I am disabled.

I have a disability.

Disability is part of who I am and how I experience the world.

I am not ashamed of who I am, I don't need complicated linguistic tricks to describe myself. I don't use language to euthanize my disability. I don't have 'special needs' and I am not, god forbid, 'differently abled.'

I am disabled.

I have a disability.

Disability exists, is real and is part of, and this may surprise you, the concept of human diversity.

I am not 'person first disabled,' I am just regular disabled. I don't believe that we are the only minority who's being is so far from the embrace of humanity that I have to specifically point out that I'm a person. I am not a person who is gay, I am gay. I am not a person who is fat, I am fat. I use person first language when it is required of me or when it's the choice of another person who prefers that terminology. But me, I'm barefaced disabled. Look me in the eye and try to deny my personhood, disabled. Disabled and what do you want to make of it, disabled.

I am disabled.

I have a disability.

We're here, We're Gimped Up, Get Used To It.

20 comments:

Glee said...

Am with you all the way there Dave! :)

John R. said...

This is a message I needed to hear. Thank you, Dave. The big trick is to get the "disability helping industrial complex" world to "get" this.....I am glad to share the diversity of this human experience with you.

Let's get to work on, dis-labels!!

Laura said...

I feel this way too and of course opinions will differ. It's funny because I like person first language in some instances. For example I hate the term wheelchair bound. One time years ago I was giving a talk to a group of 4th graders and one of them actually thought my friend who was doing the talk with me could never and I mean never get out of his wheelchair. Because he thought "wheelchair bound" meant he was never allowed to leave it and say sleep in a bed. I work with kids a lot of whom have disabilities and I always use person first language with them because I feel like its important at preschool age they learn to see disability as part of who they are but not everything they are. For myself in my group of friends I worry about it less. Because as long as its not meant to be hurtful one of the things I have learned that it is what is an adjective. Like describing my eye color This does not of course apply to someone using any such term to call me out or make fun of me. Then I will flatten you! Most of my close friends have learned I'm not easily offended. One time years ago now I was out with a friend we were driving someplace on a highway and there was a lady who's car was just stopped in the middle of the road. She was sitting in her car looking flustered. He pulls up next to her stops leans across to my window and yells out are you "DISABLED" She assured us that someone was coming to help her and we got on our way. He became sullen and quiet and I finally said to him what's wrong you are obviously upset. He said very very softy " You know I meant her car right. I wasn't calling her out or making fun of you" I burst into giggles. OF COURSE I knew that! It still makes me giggle even telling the story now. He was so afraid I was angry! That is what happens in my view when people get to hung up on the label. :D

DandG said...

I am a firm believer in people defining for themselves how they wish to be referred to. I don't think one label is more "correct" than another, as long as it is intended with love and respect.

OT, I chuckled when I saw the title of this article -- You want to get something "straight"? Pun intended?

lee said...

I so totally understand how you feel! Several years ago I was invited to a local symposium on disability. While there we were each 'registered' disabled. When they handed me a card I said 'cool! I'm a card carrying cripple!'. You should have seen the looks on the faces of the staff around me. I was taken aside and told that I used language that wasn't appropriate and that it didn't help to foster understanding or further 'our' cause.

Needless to say, I wasn't a happy camper. I asked them whether using a politically correct label would make me able to walk again. I demanded to know if using different words would stop the pain. I said that it wasn't me, or any other person in the room, they were concerned about, but themselves. It was their discomfort they were trying to cover up with fancy labels and dissembling words. I was, and am, very aware of who and what I am and I'm comfortable with myself. They people running the meeting obviously weren't. I told them that they had far greater problems than I do because they cannot see me as the person I am because they cannot see beyond a euphemism, a diagnosis, an excuse that means it happened to me but couldn't possibly happen to them. They saw my scars and my wheelchair before they ever looked at me and even then, I knew they would never be able to see the people without labels (that would be good on a tee shirt!) And until they did, nothing would ever change. I don't need pity. They do. They are the ones truly limited. I'm free to be myself, free to say and do as I want without fear. They will forever be looking for new words to make themselves feel safe, descriptors to hide behind in their gated minds.

Strangely, I wasn't invited again.
Best regards,

Lee

Anonymous said...

I just read this post after fuming at an article online by a supposed specialist physiotherapist who says (about the inherited condition that has left me unable to walk or sit up independantly) that her clinic uses a 'tough love treatment approach' and 'refuses to see the condition as a disability'. Unfortunatley I dont know any words to describe her view that arent offensive.And I've lost count of the number of times people have tried to tell me that thinking of myself as disabled is negative labelling. I AM DISABLED. And that fact doesnt make me any less of a person. Telling myself that I'm not isnt going to make me able to walk or make the world change to allow me to get about easier on wheels. I genuinely dont understand peoples fear of the word. Of course theres more to me than just my disabilities but why is that even in question? Theres more to me than being a mum or being a woman too but I'm allowed to own those labels..
Emma

Rachel in Idaho said...

*applause*

99% of the time I hear person-first language it's from non-disabled people. Makes me wonder if they even asked for opinions before adopting it.

I know I'm a person. You don't need to assure me that you see me as one with a deliberately odd bit of grammar. If you don't think I'm a person then that is your problem and you sure aren't going to fool me with a language choice! You think I can't tell? I have PLENTY of experience in this area.

Kristine said...

I am curious what inspired this one. I have a feeling it's quite a story....

I've already saved it, though, so that I can easily find this again later. I have a feeling it's going to be useful at some point. I'm so tired of people treating disability like a linguistic plague to be avoided at all costs. There's a student I've had in my class for two years now, and his name always comes up in meetings about kids we're concerned about. I'm absolutely convinced he has a particular disability, and that we should encourage the family to see a specialist, so they can get a diagnosis and learn a little more about their child. But everyone else freaks out at the idea of suggesting such a "label." Instead, they keep calling him lazy, lethargic, depressed, shy, low, stubborn.... Because those aren't labels?! How are those descriptors any better??

On a lighter note, I just got news at work of a new student coming to us from a school for students with "special abilities." I knew that was code for disability, but I really wanted to respond by asking about his special abilities... Is he a wizard? Does he have superpowers? Can he read minds? See through walls? :)

Anonymous said...

I've always had a thing about the term "differently abled", because it seems to imply that even though I have "issues" in one area, that god or nature or whomever somehow compensated me for my disability by giving me a superpower or at least an ability in some other area that nobody else has.

GirlWithTheCane said...

As someone who's been involved with developmental services as either a volunteer or paid staff for over 20 years, I had it drilled into my head that the only way to talk about disabled people was by using person-first language. Imagine my surprise when I started talking to self-advocates and researching the subject and discovered that many people were rejecting it entirely.

Their reasons changed the way I talk and write about disability in general, and how I talk about myself as a disabled person.

I'll always respect peoples' personal preferences on this, and I understand why some people prefer person-first. But it's not the way in which I want to talk about myself anymore.

Thank you for this post.

B. said...

Thanks, Dave, and thank you all commenters. Laura and Lee, I had a good chuckle.

I use a sense of humour to survive. One co-worker told me quite a while after we'd been working together that the first day she was nervous to interact with me (poor little handicapped girl type thing) until I spoke. She got it. Many don't.

Mary said...

For me, person-first language always carries an undercurrent of disapproval, eg:
"Mary is a person with (shameful characteristic)."
subtext: I can't think of anything but that characteristic and I don't think anyone else can either.

My personhood is important to me. I do require, demand even, that the world see me as a person.

But, in the same vein, my womanhood is also important to me. Biologically and culturally I identify as a woman and require the world to view me as such. Of course, it doesn't need to be constantly shouted - it's not always entirely relevant to the topic under discussion - but I would be offended to be described as a "person with femininity" by someone who felt that the fact of my femininity made it essential to also separately point out that I'm a person.

And likewise my disability. Of course I'm a bloody person. If you're so hung up on the "disabled" part that you need to keep reasserting the "person" part then we've got problems...

Anonymous said...

Wasnt it mostly parents of disabled kids who pushed the person first language thing initially? Because in that context it makes more sense,parents fighting for the world to see their child rather than just the disability when the world was/is so rejecting of difference. But the good intentions were taken too far and the non-disabled community now seem to think its all about the language used rather than about their attitude and behaviour towards the person.

Erin said...

Dave,

I'm curious how the adults with intellectual disabilities with whom you work self-identify. Historically, I know that people with intellectual disabilities have not been a big part of disability rights/pride movements, and even that they have been marginalized by people with physical disabilities. Has that changed? I know I still read a lot of bloggers who are offended when people assume they can't make decisions for themselves because they are wheelchair users. Do you think that an intellectual disability has a greater stigma attached than physical disability?

My daughter is 6 and has Down syndrome, and I think person first is preferable to using Downs or Down syndrome as an adjective (I hear this a lot - "Downs kids are ___"). Maybe stating the condition that contributes to the disability is unnecessary in some situations, but in others it can be very meaningful.

I also feel, especially since becoming involved with the school system, that many people in my daughter's life need reminders that she is a person,and not just like every other person with Down syndrome they have met. I'm under no illusions that person first language will magically open hearts, minds, and doors in our pursuit of a quality education for my daughter, but I do think having the director of special education for our school district refer to "Downs kids" when talking about appropriate educational "programs" is problematic. In my experience, most of the people using non person first terminology are the people who don't see my child as a full person.

If my daughter takes on "disabled" or "intellectually disabled" as part of her identity as she gets older, I will support her in that. Right now though, I don't know how to change the way I use language related to her disability without sounding like I'm joining up with the very people who stand in the way of her full participation in this world. Any insights you have or resources you can point me to would be appreciated!

For what it's worth, I also detest euphemisms like special needs or differently-abled.

This is tricky stuff, thanks for helping me think it through!

Laura said...

To the mom of the 6 yr old in the comments. I work from my home and provide daycare for mostly not all but mostly kids with disabilities. I never really thought much about person first language. I used it when required for every job I have had where it is the only acceptable way to speak about those of us with disabilities, but I never really thought about it other then the things that would bother me personally. Until I started homeschooling a friends daughter. She has autism and tbi. Meaning that therapists and social workers and school personnel are in and out of my home often. Let me tell you something about stigma it is so a part of the lexicon with some of these people they don't even see it. OH DEAR LORD. :) What is it about some supposedly professional people who work in the education that makes them so unwilling to see a kid as a person. Not a number not a condition not a dx but a kid!! I think its taught that way. I can also say with some certainty at least where I live that there is a much bigger stigma when a person has a intellectual issue. Not that you could tell because here where I am a lot of people use the R word and disability interchangeably. My wish for kids like your daughter is that those of us who came before are doing enough to change these things, so she won't have to fight the same battles. And I also wish that the disability community as whole would realize we need to fight it together. There's so much division just like in life I guess. So many people waste so much time trying to distance themselves from others. To prove they are ok or nor normal then someone with a different struggle. We could do so much more good if it wasn't this way.

Dave Hingsburger said...

Erin, you are quite right that the 'disability pride' movement is, at the present, more of a phenomenon within the community of people with physical disabilities. A couple years ago a group of people with intellectual disabilities, along with Joe and I and a few support staff, went to the disability pride march in Chicago. It was a wonderful experience for all of us and it sparked many a conversation. In my home agency we aim to be disability proud and disability positive and have, from time to time, disability pride activities for the staff and members. We want people with intellectual disabilities to be able to be open and positive about their disability, to shed any of the shame that gets attached to disability of any sort. I think it's important that parents parent their children with disabilities in such a way that they know they have a community and they have unique stories. In our disability pride activities we've told the stories of Sandra Jensen and Blind Tom and Hikari Oe and Gretchen Josephson and Raymond Hu ... to name a few. There are many ways to dialogue about disability that differ from the stream of cultural negativity.

Anonymous said...

Hear, hear!!

If you mean "person", the other words don't change that. If you don't, person-first won't change that.

FunMuX3 said...

Erin... mom of 6 y.o. ... interesting question. My daughter is 18 and I think (in my experience, my humble opinion, yada yada) that most of the young adults I know who have down syndrome don't intellectualize to that degree. Miss 18 has heard that she has down syndrome, and the odd time we might meet a baby with down syndrome and we talk about that the baby has down syndrome, like she does, but I'm not sure how she conceptualizes it, or even if she makes the connection. I don't believe she would refer to herself as a person with a disability or any such term, she is just M----. I know a few older friends of hers (30's and 40s) who also have down syndrome and wonder at times where they are at the journey of understanding their disability. But what I can tell you for sure that once you are a few years into life, such questions become redundant. M---- is just M----, and she would define herself in more concrete terms (I believe) by the things she does in life - student, worker (she has a part time job), girl, taylor swift fan, lover of fashion, hair, nails (she prefers a gorgeous french mani), movies, dancing, soccer, gymnastics, and BOYS and all round fabulous. Now that I think of it, I'm SURE she would describe herself this way... the diagnosis is such a small part of her world.

Does this help?

Mary said...

FunMuX3 - hi!

For me, and I think for quite a few others, there's a really big difference between my diagnosis, and my disability.

Outside discussions with my doctor, I don't really think about my diagnostic label at all. It annoys me when people not involved in my medical care think they have a right to that information.

I don't really think about my symptoms, either, unless they're being exceptionally acute. I'm an outdoor wheelchair user, but I rarely point that out except when discussing wheelchair access.

But disability, especially in the context of disability pride, is something which allows me to identify as part of a much larger group. It also covers a much wider range of issues. And it affords solidarity.

When I can't engage with the world for a lack of access (including barriers in both the physical/sensory environment and the attitudes of society), I'm disabled. These barriers occur every single day of my life, and dammit, that needs shouting about.

Identifying as disabled means it's no longer just about me. If it's not just me, then instead of simply absorbing it day after day after day as the price of being me, I can stand up (caveats apply) and say that it's Not Okay for a privileged section of society to treat my group with such utter contempt and disregard.

I feel certain that in being a mother to your daughter, you've found it's much easier to fight for others than to fight for yourself, and easier still if you don't feel alone in that fight. :)

Myria said...

Erin, I have also had struggles about how to refer to my daughter, but different struggles - she has Patau syndrome, the visible characteristics of which are not known to the general public so no one is looking at her thinking "I know what's up with her" or choosing themselves what to call her. So it's different than the issues you are dealing with. I tend to say she "has a disability" or "is disabled" fairly interchangeably. To me those phrases feel interchangeable *shrug* I am autistic (I do NOT "have autism"), but would still feel comfortable saying either I "have a disability" or "am disabled," though I know it's not that way for a lot of people. I have a feeling that in the absence of an easily usable identity-first label for Patau syndrome, she may end up using Disabled for her identity-first option.